Re: VAIL Beds.............

[Guest guest]

Speaking of Vail beds....We have looked into those as well. is

hooked up to an enteral feeding pump through the night and needs to be

confined to his bed. The Vail beds (and the others like them) are incredibly

expensive and not everyone can access funds to get them. We saw an article

in Exceptional Parent magazine several years back where a dad had " adapted " a

bunk bed set to accommodate his DD child. We bought an unpainted pine bunk

bed set and set it up against one wall. That covers one side. (dh)

added extra slats on each end so that couldn't get his head through

them. Then he built what essentially looks like a crib side for the

front....with a hinged door on each end. The doors are framed and have

vertical slats. The vertical slats in the middle are stationary. He framed

the side as one unit and slid it into the opening of the front of the bed.

He used latches to secure the doors on either end. It actually works really

well. It has taken alot of abuse over the years and held up nicely.

Because the bed was originally unpainted pine, we could leave it as is or

paint it whatever, and it looks like it was meant to be that way. Anyway, a

bunk bed, some lumber and hardware doesn't cost anywhere near what the Vail

beds cost. For what it's worth...........

Terry

Mom to , 13 yrs.

[Guest guest]

In a message dated 1/10/01 12:14:27 PM Eastern Standard Time,

Imaddenmom@... writes:

<< Speaking of Vail beds....We have looked into those as well. is

hooked up to an enteral feeding pump through the night and needs to be

confined to his bed. The Vail beds (and the others like them) are

incredibly

expensive and not everyone can access funds to get them. We saw an article

in Exceptional Parent magazine several years back where a dad had " adapted "

a

bunk bed set to accommodate his DD child. We bought an unpainted pine

bunk

bed set and set it up against one wall. That covers one side. (dh)

added extra slats on each end so that couldn't get his head through

them. Then he built what essentially looks like a crib side for the

front....with a hinged door on each end. The doors are framed and have

vertical slats. The vertical slats in the middle are stationary. He framed

the side as one unit and slid it into the opening of the front of the bed.

He used latches to secure the doors on either end. It actually works really

well. It has taken alot of abuse over the years and held up nicely.

Because the bed was originally unpainted pine, we could leave it as is or

paint it whatever, and it looks like it was meant to be that way. Anyway, a

bunk bed, some lumber and hardware doesn't cost anywhere near what the Vail

beds cost. For what it's worth...........

Terry

Mom to , 13 yrs.

>>

Wow Terry! Handy husband you have there! LOL Mine could never do that and

Seth would literally eat a wood bed. Sure is a money saver for anyone that

can do it and has a kid that doesn't find wood a tasty treat though! LOL

Wish Little Tykes made a bed like that. That is one thing that Seth won't

eat, though he does gnaw on his slide and play house. Ummm, Terry? Do

you share that handy husband? LOL

Gail

[Guest guest]

Sorry Gail...he's taken! LOL But....I know that he would be happy to help

(by phone or drawing if it's long distance) anyone who is interested. So,

Seth chews on wood, huh! Great! has the pica thing going like

crazy, but mostly he just mouths things....he doesn't really chew on them.

Probably one of the benefits of a kid that doesn't eat by mouth! LOL! I

guess you could try making it out of those steel bunk beds.....can your

husband weld? LOL!!! (Just kidding!) LOL!!! In your case I would use the

" gnawing on wood " behavior to justify the purchase of a Vail bed!

Terry

[Guest guest]

In a message dated 1/10/01 1:50:02 PM Eastern Standard Time,

smilinggail@... writes:

<< Wow Terry! Handy husband you have there! LOL Mine could never do that

and

Seth would literally eat a wood bed. Sure is a money saver for anyone that

can do it and has a kid that doesn't find wood a tasty treat though! LOL

Wish Little Tykes made a bed like that. That is one thing that Seth won't

eat, though he does gnaw on his slide and play house. Ummm, Terry? Do

you share that handy husband? LOL

Gail >>

What's a vail bed guys? Is it one of those hospital looking beds that I've

seen in magazines? I remember reading that they were like $5,000!!! When we

moved Maddie to a bed, I bought a sleigh bed at Pottery Barn. It's gorgeous

and she's kind of encased. She's only fallen out once, which is a better

record than all four of her siblings...LOL

We don't have to worry about Maddie coming out of her room as she doesn't

know how to turn door knobs yet. We just close the door. However, we do

have gates leading to the third floor and the first floor, just in case.

Donna

[Guest guest]

In a message dated 1/10/01 12:14:14 PM Eastern Standard Time,

Imaddenmom@... writes:

<< It actually works really

well. It has taken alot of abuse over the years and held up nicely.

Because the bed was originally unpainted pine, we could leave it as is or

paint it whatever, and it looks like it was meant to be that way. Anyway, a

bunk bed, some lumber and hardware doesn't cost anywhere near what the Vail

beds cost. For what it's worth........... >>

WOW Terry. Talk about a handy guy. Isn't it amazing the things we come up

with to adapt for our children?

Donna

[Guest guest]

Hi Donna,

Yes, a Vail is an enclosed bed (mesh sides) and they do run about $5000.00!

was crawling out of his crib before he was 2 yrs. About that time,

he had multiple surgeries, inlcuding the g-tube and J-tube placement which

meant that he has continuous drip feeds throughout the night. We were scared

to death that he would try to climb out of his crib and hang himself on the

tubing. So, we got our insurance to pay for a hospital crib with an enclosed

top (about $4500.00) which he used until he was almost 6 yrs. By that time,

he was really getting too big to be in the crib but we didn't know what else

to do. Then we saw the article describing the bunk bed that I told you

about. It has worked great ever since. It is a regular twin size so it will

accommodate an adult. Actually, this last Christmas, we got a

waterbed mattress and now he's really in heaven! LOL He doesn't want to get

out of bed! LOL can open doors and he is not aware of the tubing on

a medical level. As far as he's concerned, it's just something else to stim

with and he would pull it apart or get tangled up in it if he could. The

" enclosed bed " has been a godsend for us!

Terry

[Guest guest]

In a message dated 1/10/01 2:28:03 PM Eastern Standard Time, duffey48@...

writes:

<< What's a vail bed guys? Is it one of those hospital looking beds that

I've

seen in magazines? I remember reading that they were like $5,000!!! When

we

moved Maddie to a bed, I bought a sleigh bed at Pottery Barn. It's gorgeous

and she's kind of encased. She's only fallen out once, which is a better

record than all four of her siblings...LOL

We don't have to worry about Maddie coming out of her room as she doesn't

know how to turn door knobs yet. We just close the door. However, we do

have gates leading to the third floor and the first floor, just in case.

Donna

>>

Your correct on the price Donna. Outrageous isn't it? We are trying to find

a loaner or a used one. We have the gates too, but Seth goes over them or

kicks them down. He has now figured out how to stack things and climb on top

of the stack to get what he wants. The closing the door bit worked for a

while, then we had to lock it. Now his windows are boarded up because he

bangs his head on them and he has some holes in the walls down to the nails

and has cut his mouth on them. Anyone have a cage for sale? LOL Ya know,

he sounds really bad when I just read that over, but I don't feel like he's

that bad! LOL

Gail

[Guest guest]

In a message dated 1/10/01 2:48:19 PM Eastern Standard Time,

Imaddenmom@... writes:

<< Sorry Gail...he's taken! LOL But....I know that he would be happy to

help

(by phone or drawing if it's long distance) anyone who is interested. So,

Seth chews on wood, huh! Great! has the pica thing going like

crazy, but mostly he just mouths things....he doesn't really chew on them.

Probably one of the benefits of a kid that doesn't eat by mouth! LOL! I

guess you could try making it out of those steel bunk beds.....can your

husband weld? LOL!!! (Just kidding!) LOL!!! In your case I would use the

" gnawing on wood " behavior to justify the purchase of a Vail bed!

Terry

>>

Terry,

Sure wish my husband could weld because I would have had the problem solved

by now! LOL All you with handy husbands are blessed, in case you didn't

know that! LOL Seth doesn't gnaw on the wood, he ingests it. He gnaws on

plastic toys. LOL He literally takes bites out of my wood casings. I don't

really think he has PICA though, because he never does that at school. But

then again, he never gets a chance to either! LOL If He had a full time one

on one aide at home to cover when I'm cooking and cleaning, I guess I would

have no holes in my walls either. LOL Does s PICA run in

streaks...good days, bad days type of thing?

Gail

[Guest guest]

Yep, we are creative.... :)

Terry

[Guest guest]

You know Gail, I hear ya! I remember when we were in the process of moving

and we had the hospital crib set up at the new place because 's bed

was still at the old house...we hadn't moved our furniture here yet. The

hospital crib was high off the ground...too high for to climb into

himself. He had wanted to be in it and I always put the side up so he

wouldn't fall out and break his neck. A neighbor came over to welcome us and

here was sitting in this metal crib (a cage for all intents &

purposes!) I saw him looking at and I was so tempted to say...

really, he wants to be in there! LOL I just kept my mouth shut and the guy

left really quickly! LOL I was expecting a visit from Child Services

anytime! sigh! Let's say I don't share the " bunk bed setup " with just

anybody!! LOL

Terry

[Guest guest]

Gail,

I don't know if it (Pica) really runs in streaks with him or if it's more

" opportunity " like you said. The day before yesterday he had pooped before

he got up in the morning...this is a routine and I know that every few days

it's going to be a real mess..anyway, I had him lying on the floor on a towel

so I could get the diaper off and before I could grab his hand...it was into

the diaper area and then into his mouth! UGH!!!!! It's soooooo gross! I

am really fortunate to have several hours per day 1:1 respite for him and so

he doesn't have a lot of opportunity to get a hold of things that he can put

in his mouth. If he is outside, he will grab a bush, plant, etc as he goes

by and put whatever he gets into his mouth....same with dirt/sand. We have a

couple of dogs and will open his mouth as they walk by to let them

lick his tongue....more UGH!!! There is no doubt in my mind that he would

put cleansers or anything else poison that is in his path in his mouth if he

got the chance. He hasn't really ingested anything ......at least that I

know of! He does mouth everything that he comes in contact with.....hard,

soft, squishy, prickly, hairy, fuzzy, etc. LOL

Terry

[Guest guest]

In a message dated 1/10/01 3:54:23 PM Eastern Standard Time,

Imaddenmom@... writes:

<< You know Gail, I hear ya! I remember when we were in the process of

moving

and we had the hospital crib set up at the new place because 's bed

was still at the old house...we hadn't moved our furniture here yet. The

hospital crib was high off the ground...too high for to climb into

himself. He had wanted to be in it and I always put the side up so he

wouldn't fall out and break his neck. A neighbor came over to welcome us

and

here was sitting in this metal crib (a cage for all intents &

purposes!) I saw him looking at and I was so tempted to say...

really, he wants to be in there! LOL I just kept my mouth shut and the guy

left really quickly! LOL I was expecting a visit from Child Services

anytime! sigh! Let's say I don't share the " bunk bed setup " with just

anybody!! LOL

Terry

>>

Wow Terry! That would make me wait and watch for child services to knock at

the door too. They do remind me of a cage too. LOL I imagine Seth would

want to be in his, like . They must feel very safe and secure in

their. Kind of like wrapping I suppose.

Gail

[Guest guest]

In a message dated 1/10/01 3:58:55 PM Eastern Standard Time,

Imaddenmom@... writes:

<< Gail,

I don't know if it (Pica) really runs in streaks with him or if it's more

" opportunity " like you said. The day before yesterday he had pooped before

he got up in the morning...this is a routine and I know that every few days

it's going to be a real mess..anyway, I had him lying on the floor on a

towel

so I could get the diaper off and before I could grab his hand...it was into

the diaper area and then into his mouth! UGH!!!!! It's soooooo gross!

I

am really fortunate to have several hours per day 1:1 respite for him and so

he doesn't have a lot of opportunity to get a hold of things that he can put

in his mouth. If he is outside, he will grab a bush, plant, etc as he goes

by and put whatever he gets into his mouth....same with dirt/sand. We have

a

couple of dogs and will open his mouth as they walk by to let them

lick his tongue....more UGH!!! There is no doubt in my mind that he would

put cleansers or anything else poison that is in his path in his mouth if he

got the chance. He hasn't really ingested anything ......at least that I

know of! He does mouth everything that he comes in contact with.....hard,

soft, squishy, prickly, hairy, fuzzy, etc. LOL

Terry

>>

LOL Terry!

Yep, that's Seth too! LOL I think *fudge* is his favorite food! LOL Seth

can't pass a car without taste-testing it either! LOL Lick marks right down

the side of it. GROSS!

Just read that of all our body parts, our mouths are the dirtiest. I can

vouch that is true for Seth! LOL

Gail-who's going to brush her teeth now! LOL

[Guest guest]

In a message dated 1/10/01 3:59:18 PM Eastern Standard Time,

Imaddenmom@... writes:

<< We have a

couple of dogs and will open his mouth as they walk by to let them

lick his tongue....more UGH!!! There is no doubt in my mind that he would

put cleansers or anything else poison that is in his path in his mouth if he

got the chance. He hasn't really ingested anything ......at least that I

know of! He does mouth everything that he comes in contact with.....hard,

soft, squishy, prickly, hairy, fuzzy, etc. LOL >>

EW. Maddie too!!!! She opens wide and lets the dog have at it!! I FLIP

when this happens!!! Even though, reality is the dog's mouth is cleaner, so

they say. And Maddie has eaten more than her share of her own feces, as

everybody on the list knows. Same with soap. I'm not talking about just

mouthing. I think, and correct me if I'm wrong, there's a big difference

between mouthing and pica. Pica is the condition whereby a person

ingests/eats inappropriate things. My other kids did cute baby things like

munch on sand at the beach, but Maddie eats it like it's dinner. Also, with

Pica, there's the obsessive need to do these things.....ie, the daily soap

hunts and flip outs when we take it away from her. (Last week while cleaning

her room, I found 3 soap bars hidden under her bed). She is never

unsupervised, but she's very smart. She finds a way, I'll tell ya. Now,

she grabs fistfuls of lather while I'm washing her hair and shoves it in her

mouth. So she and I are in a race every day. Me to get the head washed with

amazing speed and her to get as much soap swallowed as she can!!!

Donna

[Guest guest]

Hey Donna.....

Aren't they fun?! LOL I don't think actually ingests the things he

puts in his mouth....he has trouble swallowing (probably a blessing in

disguise! LOL) and usually he spits everything out, eventually. I have had

a few scares where I was afraid that he would choke on something and tried to

get him to spit it out right away...or tried to clear his mouth the way you

would a baby...you know, kind of sweep your finger through...we have all

learned the hard way NOT to attempt this with . Not only will he

bite, he doesn't let go!! I'm not sure what the exact definition of Pica

is...I think they were using it at the school with respect to and I

assumed they knew what they were talking about....hehehehehehe! I guess I'd

better check into that so I know the difference. Anyway, he definitely has a

" mission " with regard to putting things in his mouth....we just try to keep

small things, etc. out of his reach. He has taken a bite of a bar of soap

during bathtime, but I'm pretty sure he just kind of drooled it out of his

mouth. Yeah, he's eaten his share of poop too....I could tell you

stories...but for the sake of those with faint stomachs, I won't! LOL!!!

Let's just say that I don't think there is anything that would find

inappropriate to put in his mouth! LOL At least with Maddie's preoccupation

with eating soap, you must not have to worry too much about constipation!

LOL See, there is an " up " side to everything! LOL

Terry

[Guest guest]

Donna,

You are right...I just looked up " Pica " and this is the definition I

found...I copied it just because it is so graphic! I'm gagging just reading

it! Like I said, I think I will consider it a blessing that has a

swallow problem! LOL

" Pica is the eating of non-food substances. Clay, dirt, ice, starch, animal

feces, paint, and hairballs are just a few examples of what children with

pica have been known to eat. "

Just another interesting tidbit for our lives!

Terry

[Guest guest]

In a message dated 1/10/01 9:41:46 PM Eastern Standard Time,

Imaddenmom@... writes:

<< Yeah, he's eaten his share of poop too....I could tell you

stories...but for the sake of those with faint stomachs, I won't! LOL!!!

Let's just say that I don't think there is anything that would find

inappropriate to put in his mouth! LOL At least with Maddie's

preoccupation

with eating soap, you must not have to worry too much about constipation!

LOL See, there is an " up " side to everything! LOL

Terry >>

LOLOL Terry. Yes, and truth be told, I'll take soap eating to the other...

Maddie is like in that nothing is inappropriate to eat.....cept

maybe something like cereal, or a cracker...

Donna

[Guest guest]

In a message dated 1/11/01 11:24:22 AM Eastern Standard Time,

duffey48@... writes:

<< LOLOL Terry. Yes, and truth be told, I'll take soap eating to the

other...

Maddie is like in that nothing is inappropriate to eat.....cept

maybe something like cereal, or a cracker...

Donna

>>

LOL Donna! That's Seth too! LOL He gags on a cookie or m & m, but will down

a side of a picture frame in an hour! LOL Like he has jaws of steel.

Bites right through the wood. LOL Just like Maddie with the sand too.

Stuffs his mouth so full he can't even close it! LOL Funny, but he used to

eat hair, and now he gags and has a fit if a hair gets in his mouth! Guess

that's hope for out growing the wood, plaster, poop, sand, dirt, leaves,

stones (of which many have come out the other end)! And all the other

disgusting things too! LOL

Gail

[Guest guest]

I think I know what feeding pump your talking about. I feel sorry about

that people still need those, but I was looking in my book for this semester

and it said people still have those and it keeps them living. So I guess

that's good then. And their's 2 kinds of feeding tubes.

But before I looked in my book, I'm been into the McCaughey's family. As

you know Bobbi and Ken McCaughey have a daughter 2 years older then her

septuplet siblings. The septuplets were born 3 years ago, and on tv they

have updated them about once or twice a year. I don't think they updated

them when they turned 3 but oh well. . Um it shows that once on the

septuplets is on a feeding tube due to cerebral palsly and some eating

problem. So that's why I know what a feeding tube is.

>

>

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